Clinicians and researchers have recognized a disturbing trend in recent years: colorectal cancer (CRC) in young people is skyrocketing.
In individuals under the age of 50, the incidence of CRC has increased about 2% each year since the 1990s, and, according to the American Cancer Society, is now the leading cause of death in males under 50. This is despite an overall decrease in CRC rates and mortality spanning all age groups. While researchers are working to understand the causes of this surge in young-onset CRC (YOCRC), cancer providers and caregivers are now faced with caring for patients who are significantly younger than the typical adult cancer patient.
“Unfortunately, there’s a huge spike in the number of these patients, and there’s just not a lot that’s understood about what their needs and experiences are,” said Kalen Fletcher, LICSW, a clinical social worker in Dana-Farber’s Young-Onset Colorectal Cancer Center. “Most of my patients think of colorectal cancer as an older person’s disease and as something that feels almost taboo to them.”

To better characterize and understand the challenges that surround these patients, Fletcher and her colleagues undertook a qualitative study, which included focus groups comprised of YOCRC patients and their caregivers. The study’s findings, published recently in JCO Oncology Practice, underscore the unique needs of these patients and suggest that specialized care models are required to fully address these needs.
“We know a decent amount about young adults between the ages of 18 and 39 in the research literature, but that’s a really broad range,” said Fletcher. “Most patients with YOCRC are in their early or late forties, so they’ve not been included in research yet still very much identify as younger adults.”
Not surprisingly, the needs of these individuals are distinct from other younger adults, such as those in their late teens, 20s and even 30s. This age group is often parenting younger children or perhaps thinking about starting a family, or may have responsibilities caring for aging parents, so the notion of a significant illness, requiring treatment and time away from loved ones, can be very jarring. In addition, individuals in their 40s are often at important stages in their careers, and a CRC diagnosis prompts a range of questions about time off, whether and how to inform their supervisors, and the potential financial impact — both for patients and caregivers.
Kalen and her colleagues uncovered four key themes among their YOCRC focus group participants. According to their recent paper, these are:
- Feeling overwhelmed by the health care system and desiring patient navigation.
- Feeling isolated and wanting opportunities for peer support.
- Life disruption because of difficulty juggling multiple roles and desiring psychosocial support.
- Enthusiasm about participation in research and genetic testing.
While these findings offer an important glimpse of the experiences of young adult patients with colorectal cancer, they also helped guide the creation of the Young-Onset Colorectal Cancer Center at Dana-Farber, which was launched in 2019 and is directed by Kimmie Ng, MD, MPH. The center provides multidisciplinary care and support for YOCRC patients throughout their cancer journey, from diagnosis to treatment to survivorship. It is among the first centers of its kind in the U.S. and offers a range of services geared toward the unique needs of this patient group. These include a dedicated program coordinator to help patients with appointment scheduling and referrals, a multidisciplinary care team that provides prompt and expert review of patients’ cases to jumpstart treatment, a wide range of support services that address the unique needs of YOCRC patients, and a genetic evaluation to determine if patients’ cancers are due to inherited risk factors.
“This is a really rich initial picture of the experiences of patients with YOCRC,” said Fletcher. “But we need to learn more. Right now, at the center, we’re working on developing a protocol for a longitudinal data repository that can help us gain an even deeper understanding of the needs of these patients.”
“It’s deeply unfortunate that this patient population is growing, and we need to understand why that is,” Fletcher added. “At the same time, we also must determine how we can better care for these patients as well as their caregivers.”
So very happy to hear that this program exists. I’m a patient at Dana Farber currently, and receiving ongoing treatment. I have two sons in their mid to late forties. Their dad is a cancer survivor. One son just had a colonoscopy. It’s my opinion that this program is a wonderful addition to those I’m already involved in, through Dana Farber.